does anyone on here still drive with PMR ?
driving : does anyone on here still drive with PMR... - PMRGCAuk
driving
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TedTheMaineCoon
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DorsetLadyPMRGCAuk volunteer
Most certainly - so long as you feel competent.
After I lost sight in one eye with GCA I stopped for a few months -but soon got back to it when late hubby was terminally ill.
My son came out with me the first time, just to make sure I was okay -must have been, he did treat me to a new car after hubby died - mind you he does call me the one eyed Schumacher (tells how long ago it was!) 🤣😂
🤣
Absolutely. Now I have my baby Aston Martin you could not stop me!
I took myself off the road until the dose of Pred was low enough for me to be able to concentrate and focus long enough to be safe.
sounds like a wise idea ! I don’t go out much , unless I feel I am ok with concentration. But thinking I ought to not , until my dose is lower . .
I scared myself when I found my self at a traffic light with no memory of the last mile. I kept being surprised by other road users because I was no longer anticipating. Pred was also making me an anxious driver. That was enough.
Can completely relate to this ! I even got lost ! Took an hour to get home , where it should’ve been 15/20 mins !!
PMRproAmbassador
Of course, If your neck is badly affected so you can't turn your head it might not be advisable but it has never affected me like that. In the 5 years I had PMR before pred I could only go anywhere if I could drive there and park close by. Once you are well managed on pred it shouldn't make a difference.
The starting dose of pred for PMR should be 15-20mg and for most people it doesn't affect concentration.
okay , thank you 😊
Oh yes, driving is one of the things I CAN do
Yes, I was driving throughout my diagnosis with PMR but had to stop in July 22 when I suffered compression fractures in my spine and hip but started easing back into driving in early March this year. I couldn't wait to start driving again, as I had just bought a new to me, Alfa Romeo. I really only drive to and from work, 4 days a week and the odd trip to my GP surgery. I must admit, I'm not as confident as I once was but looking back, I never thought I'd drive again! 😊
Driving is the only effortless thing I do ☺️
Me too. When going on long trips I would stop midway which was 2 hours drive . I would walk around slowly for half an hour, then on the road again for 2 hours. Since covid lockdowns I now have to stop every hour.
I really struggled to drive before diagnosis, as holding the steering wheel was painful because my shoulders were so sore and stiff. Changing gear wasn’t great either. I reduced to essential, local driving only - med appts, supermarket. Been on pred just over a month now and things are much better. I’m still keeping things local as I’m concerned about holding the position for any length of time as I still have some pain in my upper arms and shoulders. It does feel more achievable now tho, thank goodness! And reassuring to read that others here are managing it ok.
Thanks all for your helpful comments (this group is amazing!) and good luck Ted on your journey.
Thank you ! I had the same problem driving before diagnosis. I couldn’t change gear .
This group is amazing! I only joined last night & was nearly in tears as I met others that experience exactly the same , so we empathise with each other ! Didn’t realise this PMR can be so awful ! Right old game changer eh ?
It certainly is! Just so hard to get your head round the impact on your life, and even when you feel well you mustn’t overdo it! This group really is amazing tho, so much useful experience and information, and so very supportive.
I love this group ! Only joined yesterday ! And it’s answered so many ????? I had and realise this is a real illness & battle us guys & girls have to contend with 😭
I thought I was just being overly anxious, making a fuss & people will think I’m overreacting!
But ‘NO’ PMR &GCA are serious illnesses that’s really impacts our lives . And to now understand why I keep having to rest , go to bed , do chores spread out over hours/days instead of just taking an hour or so ! Lovely to have this support .
Thank you
Yes, though I avoided longer journeys at first in case my arms got tired. At the moment the PMR seems to be quiet (🤞) so I’m quite happy driving.
Most definitely. I never stopped driving as I live in a village but it's a matter of confidence. If you feel you can, go for it.
You've mentioned confidence, that's a good reason to keep driving. I've always been a bit of a 'petrol head' and drove all over the country and abroad, but as I've driven less and less over the years I've certainly lost some confidence. My husband usually drives if we go out together and always offers to take me to Dr appointments etc. but I prefer to be independent where possible. As they say, use it or lose it! So I'd say to everyone keep driving as long as you can.
Yes that’s me ‘ A petrol head ‘ ! Love it !
Sometimes that confidence behind the wheel emerges & I love the feeling !
I still have my Mercedes SLK. It's 13 years old and still done less than 30,000 miles!!! That shows how rarely I go out, but there's no way I'll part with it.😀
Yes but not long distances very often as my arms get tired. I rarely turn my head to look behind; my neck has always been stiff. I use my wing mirrors when reversing.
yes. Just judge your journey distance
Yes absolutely.
I do find an automatic gearbox makes a huge difference because driving is so much more physically demanding if you have to change gear manually. And getting in and out of the car is very difficult before the steroids get to work.
What I didn’t bargain on in planning a long trip to visit my family in Wales after moving to East Sussex 5 years ago was the mental challenge. My brain just couldn’t stay focused on the minute by minute demands of motorway driving for such a long period. But stopping at Services for a proper break and to walk my dog got me through the six hour journey. That said, next time I will go by train!
I would be lost without my car and the ability to drive but I am pleased to be back to my regular daily drive to see to my pony and to drive him in a trap, another thing I thought I would not be able to continue doing after PMR made me feel like I had seized up 6 years ago.
Everybody here has a different experience with PMR/GCA but this forum is such a supportive community and you will find that you can get your life back on track just maybe not quite as you thought it would be. Best wishes Chrissie
Yes, I drive. I had a three month period last year when I couldn’t because of shoulder surgeries. I have a small automatic car and ‘tootle’ about locally, going to the shops, to my art classes, to see friends, etc. I’m fortunate in that my husband is able to do the longer more arduous driving🌸
I'm still driving at age 88 and three years into PMR. However, I sold my Jaguar and now have a very modest electric car with a max range of 65 miles. Since all my trips are now less than thirty miles, the limited range is not a problem. My worst problem is exiting the car in supemarket car parks because I can't get the door open wide enough. I'm thinking of applying for a blue badge because the 'disabled' slots are much wider.
Yes, still driving but now small automatic car (very nippy) and have perfected the art of reversing without turning round, Regular little Lewis Hamilton I am!!! If I had to give up driving, I think I would turn very nasty!! On another matter, family used to have a Maine Coon - glorious cat.
I do live driving ! I had a fiesta xr2 - think that’s what it was ! Nippy thing too . I loved it .
Now have a corsa turbo thing ! That’s nippy too . 😆 I’ve always been a confident driver & live cars . But I’m not so good these days ! Age, mobility etc . Love my Maine Coon - He’s a real entertainer!
Still driving, but not keen on doing so until the pred kicks in fully during the late morning. Had to stop for 5 weeks after a lung operation (long story, not PMR related) but ok now.
Before diagnosis I was suffering - gear changes and constant cramp on any journey. Still not driving further than an hour before stopping.
sorry to hear you had to have a lung op ! Hope you keeping well .
All is well, apart from tapering induced fatigue and insomnia - thank you. Currently on 12.5mg for the past week after having to increase after my op for which I'd had to taper too fast and I had a flare.
Lung op was due to rheumatologist suggesting I might try methotrexate. Since that has side effects that can affect the lungs, I was sent off for a chest x-ray. That showed a 4cm growth but despite CT/PET CT/Bronchoscopy they couldn't decide whether it was malign or not so they operated. As it was next to a major artery they removed the top 40% of my right lung and it was a benign hamartoma so all is ok, just need to keep exercising to re-inflate lung if I can fight the fatigue to get out the darn door!
Bless your heart ♥️. Well I hope you can get the strength to exercise! Take care 👍🏼😊
It wasn't so much the PMR/GCA that affected my ability to drive but the Pred plus the Blood Pressure Meds. Although I live rurally and had to make it to the doctors. Automatic gear box is great I wish I had done that years ago long before PMR. I tow a little caravan too and can manage that fine although I have been towing for 58 years. I was lucky to get an early diagnosis which helped I think but 60mg of pred was a lot to cope with.
yes I opted for automatic last year ! Best choice I believe .
Wow 60mg is high !
I was put on 45 mg max and weaning off at the moment . On 35 mg , next week down to 30mg and so forth !
It's about the starting dose for GCA my brother got 100 intravenously to save his eyesight at the beginning. Do be careful you don't reduce too quickly. Details on this great forum that helped me more that the Rheumy. She had me reducing too quickly and flares are very unpleasant. Once I took guidance from this forum and not from her I did a lot better and so far no more flares. Knowing that PMR can last 6 years and more helped me focus on being patient.
great advice !! I’ll take on board 👍🏼.
I worry about that as I’ve started to wean off , my upper arm has started to hurt and can’t lift it up very much . Also shoulder and neck has started aching ! Yes I don’t seem to get alot of help from the rheumatologists !! Advice , guidance and they don’t want to commit themselves with making diagnoses. I appreciate there are many auto immune diseases & they can mimic each other , so it must be very hard . Also if you have an auto immune disease, you can have others with it .
80mg for 2 weeks, then 60mg for 8 weeks plus sight loss was why I stopped driving for a while...😼
Awww that’s rotten ! Bless your heart ♥️
All the best 😊
Distant past ....doesn't stop me enjoying life now😊
Absolutely. I have continued doing absolutely everything I did before PMR with a lot of rests in between! look for the spoon theory in the search and follow it! Best of luck. And if you can and feel like driving go for a ride!
I will toot toot 🚘 👍🏼😊
I haven't driven but twice due to neck issues. First time I drove the new car I backed into a cement pillar/plantar at the chiropractor. Forgot I had the backup camera deal. Lol. My daughter does most of the driving. Plus...when I do, very sore next day. Miss it. Will get back to it one day.
Yes. On steroids.
I didn't drive in the run up to diagnosis as I was in so much pain in my hips etc . Then anxiety , caused by Pred , got in the way. I have driven a couple of times in the last year and know I should do more but tbf we rarely use the car, prefer buses etc . I really should take the car for a spin to overcome this anxiety though as it's a bit of a vicious cycle
Yes, I've continued to drive in Mexico. Pre-PMR and when my Mum was alive (she died in 2021 at 94), I needed a car to for her and the wheelchair. Even when I was having the pain I continued to drive to get to my doctors' appointments. Driving is something my mind doesn't have to think about, even when I'm in pain, thank goodness. I don't drive long distances but I am returning to Texas in September to visit friends and there will be a fair amount of long distance driving. If it gets too much for me, I'll just return the rental car and revise my plans. Before joining this group, I would have tried to keep going but now I know that when my body says stop, stop is what I need to do or I will suffer greatly for it.
PMR itself hasn't affected my ability to drive, at all. Last week, I drove 300 miles up to Northumberland and back. Although, the tiredness can be an issue, so I plan journeys for when I am feeling rested, other than short trips round town to run errands. I do long trips early in the day when I am most alert. The pred is a different story. After less than 2 weeks on 15mg pred, I was high as a kite and so manic and hyper that my friend threatened to take my car keys off me until I had spoken to my doctor. I had to agree with her, that I wasn't safe to drive in that state of mind, as I felt like I was perhaps driving a little recklessly. The doc reduced me to 10mg daily right away. He called me a couple of days later and my anxiety was still through the roof and my dosage was reduced again. Since then, I have felt fine with driving.
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